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It’s a day of metastatic awareness

BY GUEST BLOGGER | OCTOBER 13, 2011

October 13 is National Metastatic Breast Cancer Awareness Day.

As these things go, it's not an impressive day: The post office won't close, it's not a parking holiday and the trains and buses will follow their normal schedules. There are no NMBCA Day greeting cards and no special flowers or candy to buy.

But for me and the thousands of other people living with metastatic breast cancer, Oct. 13 is a big deal.

It's our day, a day where hopefully we can tell our stories, foster understanding of what it is like to live with an incureable disease and call attention to the urgent need for more research that will help us live longer with a decent quality of life.

It's a day we can remember the family and friends we have lost to this disease.

For people with metastatic breast cancer and their families, every month is Breast Cancer Awareness Month. We are all too aware of this disease.

But many of us didn't start out with that knowledge. My mother died of inflammatory breast cancer when I was 17. I thought I knew something about the disease. Ha!

My breast cancer had spread to my bones when it was found. Before my own diagnosis, I knew that breast cancer could spread, but I didn't realize it could spread to your bones.

Given that my working knowledge of the human skeletal system was largely derived from a Grateful Dead t-shirt, I had a lot to learn about metastatic breast cancer (aka stage 4).

If you lost someone to breast cancer, you lost them to metastatic breast cancer. It might have been triple-negative breast cancer, triple-positive breast cancer, inflammatory breast cancer, hormone receptive-positive breast cancer (ER/PR+) or some variation.

Regardless of pathology, if a person has metastatic breast cancer, it means the cancer spread outside the breast, typically to the bones, liver, lungs or brain.

My friend C.S. says early-stage breast cancer is like pulling a dandelion: You dig out the yellow flower, roots and all. Hopefully it never grows back.

"But with metastatic breast cancer it's as if the dandelion has gone to seed and the little white seeds have drifted on the winds of your lymph system to the greater confines of your body," she says. "It's pretty hard to see those little white seeds until they take root in your bones, liver, lungs or brain and then you start spraying the oncologic equivalent of weed killer but those little white seeds are pretty smart and keep developing resistance to the various chemos, etc. so you keep trying new and improved kinds."

I am fortunate - my low volume of bone mets hasn't done much over the past couple of years. My cancer is currently stable on anti-hormonal treatment. Eventually this drug will stop working, and I will try another one. Eventually I will have to move on to the big guns: chemo. And then I will always be on chemo.

Treatment does not end. Doctors' appointments do not end. Scans do not end.

But I am not alone: there are currently 155,000 people in the U.S. living with metastatic breast cancer. Some of them are my fellow volunteers at the Metastatic Breast Cancer Network (www.mbcn.org).

I have taken great inspiration from their stories and I look forward to hearing more of them at the annual Metastatic Breast Cancer Network Conference in Baltimore this month (Oct. 28-29 at Johns Hopkins).

Remember us on Oct. 13 - and every day!

Katherine O'Brien blogs at ihatebreastcancer.wordpress.com.

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COMMENTS

After 4-1/2 years, by breast cancer came back in the left axilla, left supraclavicular, and left subpectoral areas. My doctor says he does not consider these mets, but I read a recurrence above the clavicle is considered a met. Please advise.
- Posted by Lynn Hanrahan 10/13/11 2:20 PM

Thank you, Katherine, for this wonderfully written post. I will share it with others in the hopes that it helps to further educate them about the differences between the types of breast cancer.

Sending you lots of good wishes on this very important day,

Julie Matthews
The Side-Out Foundation
- Posted by Julie Matthews 10/13/11 2:24 PM

Just thought I would mention the video www.facesofmbc, as I am the 80 year old in the video. Was diagnosed with MBC in 2005, after being "Cancer free" for 10 years, when I had my mastectomy in 1995. Initally , it was in my sternum, and remained stable until a Feb.2011 PET showed it has spread to lung, liver and lymph nodes in my chest. Changed treatment, had another PET in Sept. 2011, which showed further progression. Will wait 2-3 months, then ....?
I still feel pretty good tho, and am enjoying life,playing my Organ, and trying to have as normal a life as we( my 80 year old husband and myself)can.
- Posted by Marilyn Speedy 10/13/11 5:24 PM

I have breast cancer mets - to the skin. I have about 20 spots - mostly on my back. Small, up to 1" in diameter, slightly raised, pinkish spots. Would be interested in hearing from others with this condition. Not sure what to expect in the future.
- Posted by Nancy 10/13/11 5:33 PM

Katherine, what a wonderful post. Thanks so much for all you do. Since I have IBC, I will probably be joining the MBC group at some point (hopefully later than sooner). In the meantime, know that there are many of us out here who are listening.
- Posted by claudiafauver413 10/13/11 6:43 PM

Loved this article - very easy to understand. I was stage 3 and currently teach a weekly class for women living with metastatic breast cancer. They inspire me and take the fear of the unknown away with their authenticity and humor and courage. Loved your reference to the Grateful Dead:)
- Posted by Kelly Inselmann 10/14/11 12:49 PM

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